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An injury, then never-ending pain
A new law takes aim at improving treatment for little-known condition
By Virginia Linn
Pittsburgh Post-Gazette

Jessica Cleaver's troubles began with a fall off her backyard swingset
when she was 6.

She broke her right wrist, but a month after the cast was removed, her wrist started to hurt again -- as bad as the day she broke it. X-rays showed that it had healed properly. Three orthopedic doctors examined her wrist, recasting it three times.

"That's all they could figure out what to do. It still hurt,'' said Cleaver of South Park Township, who's now 23. "I kept going to doctors, and one doctor even looked at me and said, 'You're doing this for attention.' ''

The burning pain worsened as she got older, and still, doctors found no cause. Some days her hand turned purple. She played soccer, softball and even danced with the pain, crying in frustration at the end of each day. "I loved the activities so much, I wasn't going to give them up for anything.''

The Internet had evolved by the time she was in her first year at South Park High School, and one day she typed in her symptoms on a health Web site. Three words popped up: reflex sympathetic dystrophy. Yesterday, this little-known medical condition got a little brighter on the public radar screen.

Gov. Ed Rendell signed into law a bill designed to raise awareness of and promote education about this neurological condition, which causes chronic and debilitating pain for between 1.5 million and 6 million Americans. Pennsylvania joins New York and Delaware in enacting this legislation.

Also known as complex regional pain syndrome, the condition usually strikes after an injury -- even one as minor as stubbing a toe -- and is caused by an abnormality in the nerve pathways that causes a misfiring or hypersensitivity. The condition was first documented among wounded soldiers during the Civil War.

Under the new law, the state Department of Health will set up RSD education and outreach programs, not only for the public, but for doctors as well. Information likely will be dispensed in brochures and other literature and on its Web site.

Education of Pennsylvania medical students and doctors is key, said Jenny Dye, cofounder of the RSD Awareness Coalition in Northumberland County, which pushed for the legislation sponsored by its local Republican state representative, Merle Phillips.

"If you get a diagnosis in the first three to four months, there's a total cure rate,'' she said. "It's imperative. If a patient goes untreated, it may be too late for him.' '

Following a standard regimen of anti-inflammatory and pain medicines, rest and physical therapy in the early stages may stop or reverse the condition.

"If you stub your toe, there will be swelling, but it eventually gets better,'' said Dye, 39, whose RSD resulted from nerve damage and other injuries she experienced in a traffic accident five years ago.

"With RSD, it doesn't get better, it just keeps getting worse. If a person is experiencing pain that is too great for the injury, doctors should address it immediately.' '

Dr. Robert Schwartzman, a renowned RSD specialist at Hahnemann Hospital in Philadelphia, emphasized that there is no evidence of a magic cutoff time in which treatment is or is not effective, but said any condition diagnosed within six months is considered early.

"What you need is a correct diagnosis. You need to stop what started the problem. Fix what's wrong and then block this amplification of pain.

"The problem is doctors are not aggressive,'' he said. The condition "is always missed. I don't see cases most of the time until the patient has had it for two to three years. The awareness of the problem is not there. The poor patients who have it are always accused of having a psychiatric illness when they don't.' '

The condition can be devastating.

Rick Ulrich, 41, who co-founded the coalition with Dye, was four days of re-election to this third term as Northumberland County coroner in October 1997 when a tractor-trailer rolled on top of his car. He had blunt force injuries to his left knee, which triggered RSD. It wasn't diagnosed until 15 months later.

The pain was so great ("when water hit my knee it felt like little burning beads of acid'') that it disrupted his sleep and he had trouble with his duties as coroner. "I looked terrible. I wasn't sleeping,'' he said. Then politics came into play. "The opposite party started to spread rumors that I was on drugs.' '

The RSD eventually spread to his lower left leg, causing the muscles
and toes to contract. Two toes were amputated. The condition has now
spread to his right leg. He's on disability and uses a cane .

"For me it's tough,'' he said. "My oldest son is 15 and I have a 14-year-old and 9-year-old. I can't really do anything with them as far as physical activity. I can't even cut the grass. I can't shovel snow .''

Among education efforts, Dye said, RSD patients need to be encouraged to remain active and to not give up.

"A lot of people with RSD, they curl up in a ball. They don't move. They stay in their rooms.

"You can't stop living life. You have to push yourself.' '

That's been Cleaver's philosophy, despite many setback s. The pain became so great, she had to quit her high school softball team. Later, she made the cheerleading squad at Niagara University in New York, but had to quit after four months when RSD spread to her left hand.

Now taking eight pills a day (painkillers, sleeping pills, anticonvulsants to dull the pain spasms), she attends California University, majoring in criminal justice. She runs the carousel ride in Century III Mall one day a week, even though lifting children on and off ride horses can aggravate her condition.

Doctors have told her she may be on disability by the time she's 30, but she tries not to think about that. She recently got engaged and is looking forward to graduating.

"I came this far,'' she said. "I'm not going to give into it. There's no way.' '


January 27, 2004

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